The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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advice/ideas re POTS

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by Richard7, Feb 24, 2017.

  1. Richard7

    Richard7 Senior Member

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    Australia
    Hi, just wanting to pick everyone's brains.

    I have just seen a cardiologist, as my town has no neurologist.

    I was hoping, my doctor was hoping, that the cardiologist could give me some help re POTS.

    I did the usual tests, saw him in November, he expressed concern re my pulse pressure (which was really high) and pressure which was also high, and sent me off for more tests. I just saw him again.

    He is no longer concerned by my pressure (it was 50: 140/90) which he said was normal. The tests showed no heart disease. Which seems to have been his only concern.

    He noted some osteoarthritis on the X rays but everything else in every other test was good.

    I do not have the results just his interpretation.

    At the time I was so relieved that there was nothing physically wrong with my heart that I did not really push him on the POTS, and he had me out the door very quickly with the advice not to contact him unless there is a really big change in my symptoms.

    But I did ask his advice re POTS and ... His conclusion re POTS was that there are a lot of different medications that people recommend for it which means that there is nothing that really works.

    Which is not going to get me on my feet or keep me there.

    The POTS is bad, standing at a good point on a good day I am in the 90s but frequently find myself in the 120s, and once when I checked despite being really lightheaded (and perhaps unduly brave) 196 whilst sitting. (I had pushed it a bit too far trying too cook dinner or wash dishes so that I could cook dinner or something of the sort and had an evening where it just jumped all over the place from mid 80s to 196 and I was consequently unable to do anything and unable to rest).

    My resting heart rate is usually about 50, as low as 44 as high as the mid 60s. But when I have had it together enough to measuring it carefully and regularly it has sat in the high 40s and low 50s.

    POTS is the major limit on my ability to do anything. It is the bottleneck. When for some reason it is less of a problem I start having issues with muscle pain and muscle failure. But that has not been the case for 8 mnths or so and has rarely been the case for years.

    I spent much of yesterday and the previous day in bed. And today, well the same really but I spent a few hours sitting at the computer, and an hour and a half in 30 minute blocks doing a mixture of standing and sitting on a stool while washing and putting away dishes. I have managed to bring the bins in and check the mail - which I cannot always do - and have spent much of the rest of the time lying down. Today has been both unusually vertical (for me) and mostly horizontal.

    So the POTS is bad and a major problem in my life.

    I know that it improved, became less on an issue in autumn and early winter last year when I was doing oral probiotics, oral liquid nilstat and intermittent fasting. But the improvement was small and all of it disappeared in August and I am not sure why.

    I think the improvements may have been due to the work I was doing on my oral microbiome - though at the time I thought it was all about the intermittent fasting, and so was really confused when everything fell apart.

    But recently I have been pursuing infection - I have moderate nasopharyngitis and am following Dr Osamu Hotta's approach to that, plus some probiotics. I also recently had some antibiotics to deal with b. hominis (December), am treating athletes foot (with a standard treatment that I hope works better than the tea tree oil I have used unsuccessfully for the last year or so) and am coming to the end of a course of nilstat (tablets).

    I am also taking bunch of other things re permeability and inflammation and anxiety (which seems OK at the moment, even when the POTS is bad, but I still feel that I am on a bit of a tightrope re anxiety).

    For POTS I am mostly taking salt and potassium. They have a quick and noticeable impact on my heart rate, but it is a bit hard to judge exactly how much I need and I still will sometimes wake up with tachycardia in the night and will generally have some 1st thing.

    I also take b complex because something in it seems to work when the salt and potassium don't. I just spread it out in 4 doses, well 2 halves of a b complex and 2 halves of a multi, unless I feel a need for something extra.

    I am going to chase my GP to see if she has any ideas, but does anyone here have any ideas of where I should go from here?
     
  2. ahmo

    ahmo Senior Member

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    Northcoast NSW, Australia
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  3. Richard7

    Richard7 Senior Member

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    Thanks, ahmo I will read the link.
     
  4. ryan31337

    ryan31337 Senior Member

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    Results probably would have been very different if tested on a different day or under exertion/standing. This seems to be lost on those not that familiar with POTS.

    Again sounds rather like he doesn't know the specifics of POTS well. There are a lot of different medications because there are many different presentations of POTS due to it being caused by many different things! POTS Patients often make significant QOL improvements on meds.

    This is a good start - a knowledgeable doctor will want to run a 24hr urine collection for volume and sodium excretion. This can then better guide your supplements/fluid intake. May also benefit from having some endocrine tests like Aldosterone done.

    I would find a POTS specialist cardiologist to get some real help - good luck!

    Ryan
     
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  5. bertiedog

    bertiedog Senior Member

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    South East England, UK
    @Richard7 I would like to let you know that 20 mg Propananol taken on waking sorts my POTS provided the weather isn't hot or I am not in a too hot room. If those situations happen then by 3 pm I would need to take another dose to control symptoms.

    If I have been sweating a lot for several days I would also need a very low dose of Fludrocortisone (1/2 tab, 50 mcg) and that would put me right. I also have lots of sea salt with my food on a daily basis but that isn't sufficient if I get too hot.

    My GP was happy to give me the Propananol, I didn't need to see any specialist, all I had to do was to explain to him my symptoms. The other thing to watch out for is not to have any injection with adrenaline because that can make us feel horrendous. (Its obvious I have a tendency to make too much adrenaline).

    Finally I should mention that my adrenals were shot and so I have to take low dose Prednisolone which supports them and takes away the horrible symptoms of adrenal insufficiency. I think there is a strong link between hypo functioning adrenals and POTS. (I don't have scientific evidence for this just from following the experience of many sufferers of POTS).

    I hope you can get some treatment, I am sure there is lots of information regarding the use of low dose beta blockers to control POTS. My experience was that it turned my ability to exercise around pretty quickly.

    Pam
     
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